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Old 03-22-2012, 10:31 AM   #1
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Arachnoiditis - what do you know?

Had a Lumbar fusion at L4-5 in December 2000. Was good for 8 years. Had 3MRI's since 2008 because of return of pain. Each one said arachnoiditis. Doctors will not discuss with me. I've read up on internet and know it is inflammation of membrance that protects spinal column and there is no cure for it. Do you know anything about it? I also have another herniated disc above where my fusion was done. I also have nerve clumping. Is nerve clumping part of arachnoiditis?

 
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Old 03-22-2012, 12:30 PM   #2
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Re: Arachnoiditis - what do you know?

Welcome to the board. I'm not sure why your doctors would not discuss arachnoiditis with you. I can understand if they might have conflicting opinions about it. I had one surgeon tell me I had it and another told me that wasn't the case....I chose to believe the second one, particularly since all the symptoms went away when I had additional fusion surgery.

Since I was under the impression I had arachnoiditis, I did quite a bit of reading on the topic. There is some good information online. What I mainly found out was that the topic is not well understood by many spine surgeons. They continue to believe (probably as they were taught in med school) that it is infrequent. In reality, particularly now that back issues are being treated much more aggressively than even ten years ago, research I found indicated that arachnoiditis is more common than previously thought or diagnosed.

My guess is that spine docs don't want to talk about it because it would be just one more thing for patients to worry over. Would we be more reluctant to have all the injections that are being "recommended" to us? Or to have the invasive testing like discography??

In order to receive a proper diagnosis and a plan of treatment, I think you will have to find a pain management doctor that has good knowledge of arachnoiditis.

For anyone reading this thread who is not familiar with arachnoiditis, you can read about it on the NIH government website:

http://www.ninds.nih.gov/disorders/arachnoiditis/arachnoiditis.htm

The most significant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. It is often associated with a burning, stinging feeling. It can cause tingling, numbness and weakness in the legs. Actually one can have all the usual nerve pain symptoms -- creepy-crawly feelings, hot water running down the leg, etc. But in more severe cases one can have twitching and there can be a loss of bladder or bowel control.

At present, there is no known cure for arachnoiditis, but clinic trials are ongoing. The person is pretty much left with pain management.

I am very sorry you have been told you have arachnoiditis. I believe on MRI that nerve clumping is often a symptom that is seen with arachnoiditis.

What type of doctor diagnosed you and have you seen anyone else?

 
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Old 03-22-2012, 12:50 PM   #3
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Re: Arachnoiditis - what do you know?

A neurosurgeon did my fusion - and 8 years after the fusion when I went back (when I bent over and pain started again) the same doctor ordered the MRI and made no mention of arachnoiditis to me. I got a copy of my report and read it myself. Before he did my fusion he told me I would never be able to have another back surgery - period. Well, I realize that has been 11+ years ago, but that surgery was the hardest thing I've ever been through in my life. After that, I went to orthopedics and then to brain and spine specialists. No doctor EVER mentioned arachnoiditis to me. I found this out because I got copies of my reports and read them myself - and then looked words upon the internet. Because of what I have read, I refuse to do any additional manipulation, shots, whatever to my back. I see a doctor every 3 months for pain meds - that's it. Am I wrong? Should I try to stop taking the meds to see if I can feel better? I have 99% of all the symptoms you stated above in your post. I just worry because I have a full time job and don't want to have to keep taking more and more pain pills. What am I to do?
Thanks for responding!

 
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Old 03-22-2012, 04:24 PM   #4
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Re: Arachnoiditis - what do you know?

If I might ask a couple more questions...did the original surgeon indicate why you could never have further back surgery? You mention recovery was the hardest thing you ever did. Were there problems during recovery? I know recovery in general is difficult, but do you think yours was more difficult than normal, if you can say?

Have the surgeons you have seen subsequently also told you that you should not have further surgery?

 
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Old 03-23-2012, 07:16 AM   #5
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Re: Arachnoiditis - what do you know?

I'm not sure why the original surgeon told me I could not have any other surgeries. He either didn't explain or I just don't remember. I know technology has increased trememdously since then. My recovery was actually extremely good according to my doctor. I just remember the pain I went through that first few days. Unbearable! I was on a morphine pump for a week! It was horrible. But when I went to see the doctor a week after I got out of the hospital, I actually dressed myself that morning by the hardest. He told me that most of his patients come in to see him in their pajamas. A follow-up visit - I think it may have been an xray, showed that my bone was growing back quickly which he said was above normal. Especially since I'm a smoker. The last doctor told me to tolerate it as long as I can, continue to take my pain meds and when I get to the point of not being able to function, then we will start at the beginning with steirod shots. And, as we know any additional manipulation to the spine can make arachnoidist worst. A thought of anyone touching my spine is unbearable to me. I hate having to take pain meds but they allow me to have someone of a life. I can hang for a couple of hours as far a socially and then I got to go home to my bed for a bit. My job is a legal assistant and I do a lot of sitting. I have to work, so I have to take my meds in order to make it through the day. I believe the reason doctors do not want to do additional surgery is because they know the arachnoiditis would become worst - although they will not say that to me. I believe they just don't know enough about it and don't want to admit it.

 
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Old 03-25-2012, 11:59 AM   #6
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Re: Arachnoiditis - what do you know?

I posted something on another thread that applies to your possible situation.

It is on the "entrapped nerves" thread, if you want to read it.

I think one thing that is important for you to determine is whether most of your pain is coming from the new disc herniation rather than from the nerve clumping. You can have pain coming from both issues, of course, and it is probably hard to tease out one from another.

If you have a herniated disc that is currently compressing a nerve and causing new neurologic problems, it would seem prudent to find out whether it can be treated. Hopefully the herniation will heal on its own and will no longer be a factor.

I can tell you that not all radiologists have the experience to accurately read the evidence of arachnoiditis on MRI...and that's true of spine surgeons, too. I had no agreement on mine, as I think I already mentioned to you.

 
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Old 04-23-2012, 05:28 PM   #7
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Re: Arachnoiditis - what do you know?

Quote:
Originally Posted by Roadvibrations View Post
Had a Lumbar fusion at L4-5 in December 2000. Was good for 8 years. Had 3MRI's since 2008 because of return of pain. Each one said arachnoiditis. Doctors will not discuss with me. I've read up on internet and know it is inflammation of membrance that protects spinal column and there is no cure for it. Do you know anything about it? I also have another herniated disc above where my fusion was done. I also have nerve clumping. Is nerve clumping part of arachnoiditis?
I think I have arachnoiditis... could you personal messege me roadvibrations? thanks

 
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